US Standard of Care
The US Standard of Care for Lipedema has been published in a peer-reviewed medical journal, Phlebology 2021 May 28. Free full text of this document is available from: Standard of care for lipedema in the United States - PubMed (nih.gov) or doi.org/10.1177/02683555211015887
A multidisciplinary team (see Committee Members) developed the US standard of care for lipedema with support from the National Institutes of Health (NIH) National Heart, Lung and Blood Institute (NHLBI) and others (see Supporters). An initial meeting was held in April 2019 (see Meeting) and work was completed in 2021.
Goals for this effort included:
Agree on a description of lipedema and set a standard of care for the United States
Develop and publish a clinical practice guideline to be available for healthcare providers, patients, and families
Manage lipedema in a financially responsible manner in the United States
Members of the standard of care committee formed the Lipedema Education Group (LEG) to develop and publish additional guidelines. See the information on the LEG webpage if you are interested in participating.
To be informed of new developments, please join Community.Lipedema.com to get on our e-mail list.
March 2021 Panel
On March 30th, 2021, a panel of experts in the field of Lipedema and Lymphedema came together to discuss pre- and post- surgical care in their practices and outline general recommendations. The panel consisted of a mix of doctors and lymphedema therapists. Several on the panel are leading the charge to develop a standard of care for Lipedema, so clinical responses from this webinar were recorded to aid in that effort. The moderator, Dr. Karen Herbst, recorded the responses and recommendations made throughout the webinar and summarized them in this document.
April 2019 Meeting
The first United States Standard of Care meeting for lipedema was held on April 11-12, 2019 in Baltimore, Maryland in association with the Fat Disorders Resource Society conference (fatdisorders.org). See the press release.
Agenda items included:
Goals of the Standard of Care (SOC) Document for lipedema
Seminal Publications from literature published up to January 2019
Review of SOC guidelines for lipedema: Germany, UK, Spain, Netherlands
Review of liposuction for lipedema literature
SOC questionnaire data
Diagnosis of lipedema
Clinical measures to ensure early detection of lipedema
Treatment and support of lipedema including behavioral health
Ms. Chris Dickey served as Parliamentarian for this meeting.
Committee Members
Members of the US Standard of Care Consensus Committee include:
Polly Armour, BS, lipedema patient and advocate, Executive Assistant, Stutz Lipedema Services LLC.
John R. Bartholomew, MD, Director, Thrombosis Center, staff physician, Sydell and Arnold Miller Family Heart & Vascular Institute at Cleveland Clinic. Board-certified Diplomat Internal Medicine and Vascular Medicine.
Margarita Correa, MD, CLT, Board-Certified, Physical Medicine & Rehabilitation; lipedema and lymphedema physician.
Steven Dean, DO, FACP, RPVI, Director, Vascular Medicine Program, Director, Cardiovascular Medicine’s Noninvasive Peripheral Vascular Laboratory; professor of clinical medicine at The Ohio State University Wexner Medical Center.
Paula M. Donahue, DPT, MBA, CLT-LANA, Assistant Professor, Physical Medicine and Rehabilitation, Physical Therapist Level IV, Vanderbilt Dayani Center for Health & Wellness
Chuck Ehrlich, MS, MBA, Publisher at Lymph Notes and lead author of the Lymphedema and Lipedema Nutrition Guide.
Tami Faris, OTR/L, CLT-LANA, specializing in the treatment of lymphedema and lipedema in the Kansas City area.
LaDonna Gabrielson, lipedema patient and advocate.
Karen L. Herbst, MD, PhD, Associate Professor and Director of the TREAT Program, College of Medicine, University of Arizona; Board-Certified Endocrinology
Emily Iker, MD, Physical Medicine and Rehabilitation Specialist; Director of Lymphedema Center in Santa Monica.
Linda-Anne Kahn, CMT CLT-LANA CHNC, Director & Founder Lymphatic Therapy Services of San Diego; frequent speaker on lipedema; co-author “Lymphedema and Lipedema Nutrition Guide.”
Ethan Larson, MD, Board-Certified plastic surgery; worked with Dr. Herbst for years providing samples from women with lipedema to Dr. Herbst’s TREAT Program.
Kathleen Lisson, CMT, CLT, Solace Massage and Mindfulness, San Diego.
Erik Lontok, PhD, Chief Science Officer, Lipedema Foundation.
Lindy McHutchison, MD, Phlebologist and Medical Director, Carolina Vein Center, Durham, North Carolina; Board Certified in Obstetrics and Gynecology.
Janis Miller, OT, CLT-LANA, Olathe Health, Olathe, KS, USA
Nicholas Pennings, DO, Chair, Family Medicine, Jerry M. Wallace School of Osteopathic Medicine, Director, Campbell University Health Center, Board-certified in Family and Obesity Medicine, Board of Trustees, Obesity Medicine Association.
Jaime Schwartz MD, FACS, Board-certified Plastic Surgery.
Michael Schwartz, MD, Board certified, Facial Plastic and Reconstructive Surgery and Otolaryngology; Diplomate, American Board of Cosmetic Surgery.
Nadiv Shapira, MD.
Molly Sleigh, OTD, OTR/L, CLT-LANA, Adjunct Professor, Rocky Mountain University; Doctor of Occupational Therapy; Certified Lymphedema Therapist.
Edely Wallace, E-RYT, CYT, CDT, MLD, MT, Lymphatic Yoga Instructor.
Thomas C. Wright, MD, FACP, Board Certified Phlebologist, Cosmetic Surgeon and Dermatologist, Medical Director Laser Lipo and Vein Center; cares for women with lipedema and donates samples to Dr. Herbst’s TREAT program.
Note: Dr. Herbst is now in private practice, Erik Lontok is at the Barth Syndrome Foundation, Nadiv Shapria joined in 2021.
Supporters of the Standard of Care for Lipedema in the US
The US Standard of Care Consensus Committee for lipedema gratefully acknowledges the support received from:
The National Institutes of Health and National Heart, Lung and Blood Institute (NHLBI) grant 1 R13 HL147503-01 (Karen Herbst, MD, PhD).
Lipedema Foundation.
University of Arizona.
Fat Disorders Resource Society.
Ethan Larson MD, and Jamie Schwartz, MD.